Core experiences of parents of children with autism during the COVID-19 pandemic lockdown

Background

The lockdown that was imposed by governments as part of the attempt to contain the COVID-19 pandemic included extreme measures, such as home confinement and shutting down of special education systems. Our aim was to learn about the core experiences of families of children with autism with this significant life disturbance.

Materials and methods

Thirty-one parents of children with autism participated in semi-structured telephone interviews which were transcribed verbatim and then underwent a qualitative, immersion/crystallization analysis. The analysis was conducted in an iterative consensus-building process to identify parents’ experiences, concerns, challenges, coping strategies, and perceived needs during the lockdown.

Results

The main themes that emerged related to the various parental concerns revolving around the possible regression of their child as the special-education systems shut-down; the major difficulties encountered in this unique time which included the change in routine, lack of space for energy expansion, food and sleep issues and altered family dynamic; the functional, social and behavioral implications the lockdown had on these children; and the manner by which the parents coped as indication of the parents’ resourcefulness and outlook.

Conclusions

Our findings broaden the insight into the underlying elements of the hardships and gains experienced by children with autism and their parents in times of significant life adversity. As part of the emergency preparedness to a pandemic or other acute life-disturbances, programs of intervention should be directed at supporting and guiding parents on how to better accommodate to the situation, thereby optimizing their coping strategies and resilience.